• Welcome to Our Mothership!
    Welcome to Our Mothership!

    Our website remains at the center of our education and outreach programs.

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  • The International Fabry Community
    The International Fabry Community

    Our fight with Fabry Disease does not have geographic boundaries

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  • Did You Know?
    Did You Know?

    The NFDF provides many Fabry community programs?

    Read More
  • Patient Reported Outcomes (Pros) Program
    Patient Reported Outcomes (Pros) Program

    We are learning from the PROs … individuals with Fabry disease!

    Read More
  • Recognize and Rescue Everyone
    Recognize and Rescue Everyone

    Please participate in our Fabry disease education and awareness initiatives.

    Read More
  • Fabry Family Weekend Camp
    Fabry Family Weekend Camp

    … is in September at Victory Junction, Randleman, NC

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  • In Their Honor
    In Their Honor

    Strength, courage, contribution and hope

    Read More

  • Welcome to Our Mothership!
  • The International Fabry Community
  • Did You Know?
  • Patient Reported Outcomes (Pros) Program
  • Recognize and Rescue Everyone
  • Fabry Family Weekend Camp
  • In Their Honor

"Life is no brief candle to me. It is sort of a splendid torch which I have got hold of for a moment, and I want to make it burn as brightly as possible before handing it on to future generations." -George Bernard Shaw

We have a great new resource for individuals with Fabry disease!

We have had many questions and disscussions about what people with Fabry disease should have with them in an emergency. What is the essential information an emergency care professional should know about Fabry disease? What should they know about you?

To develop this handbook, we started with a one-sheet document we prepared for our new Fabry Community Landscape handout about what physicians should know in the event of an emergency. We asked a variety of physicians with Fabry experience to comment on that document and incorporated their comments. Then we modeled much of the rest of the handbook after a book written by Dr. Michael F. Roizien and Dr. Mehmet C. Oz with The Joint Commission called “You – The Smart Patient”. Their book was very helpful in constructing our booklet to give people with Fabry disease a resource they can keep with them for emergencies and to track their medical information.

We hope the booklet is a useful tool for our community!

To receive a booklet, register on our updated website as soon as possible at www.fabrydisease.org. If you registered in the past but it was before July 2016, please re-register. Select the Register/Login link at the top of the homepage at www.fabrydisease.org.  Then select "Don't have an account" and complete the registration form. We'll send the booklet and other resources in the order the new website registrations are received. We'll confirm your contact information with you before mailing anything to ensure we don't waste our limited resources mailing to incorrect or outdated addresses.

Please provide feedback and suggestions on the booklet after you have had a chance to use it so we can make improvements in the next version. send input to This email address is being protected from spambots. You need JavaScript enabled to view it. or phone 800-651-9131.

My Health Handbook Introduction

Fabry Disease Community Announcements

  • The Fabry Community Landscape Handout

    Have you seen The Fabry Community Landscape handout? 

    The Fabry Community Landscape handout written by Jerry Walter provides information that may be helpful to make your journey with Fabry disease easier. 

    To view or print

    Read More
  • "My Health Handbook and Emergency Information" Booklet

    We have a great new resource for individuals with Fabry disease!

    We have had many questions and disscussions about what people with Fabry disease should have with them in an emergency. What is the essential

    Read More
  • Hooray! We have a color and a ribbon.

    Our official awareness color & ribbon have been a long time coming!

    Over several years various small groups of the Fabry community had many discussions about an official color and an awareness ribbon, mostly on

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Why Early Diagnosis is so Important?

  • Jerry

    Jerry

    • Severe hearing loss/hearing aids: Age 50
    • Heart attack: Age 52
    • Pacemaker/defibrillator implanted: Age 52

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  • Lisa

    Lisa

    • Heart attack: Age 38
    • Stroke: Age 40

     

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  • Becky

    Becky

    • Open heart surgery: Age 44
    • Pacemaker/defibrillator implanted: Age 44

     

    Read More
  • Mandy

    Mandy

    • Several transient ischemic attacks in 30s
    • Strokes: Ages 38 and 40

     

    Read More
  • Glen

    Glen

    • Kidney failure/dialysis: Age 33
    • Transplant: Age 34

    Read More
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We Need Your Help

As a IRS 501(c)(3) non-profit support organization we rely on donations from organizations and individuals to provide meaningful support and assistance programs to people/families with Fabry disease. Please give generously!  

DonateNow

Thank you to our corporate and foundation sponsors as well as our many individual donors. Contributions of all sizes add up to make a tremendous difference.

Connect With Us

Do You Have Questions?

Visit our Frequently Asked Questions page to read about common questions related to Fabry disease.

Frequently Asked Questions

Contact Us

Founder's [br]Corner

We continue to make great progress on finding new ways and improving current ways to support our community. We hope our efforts contribute to making your lives better! Founder and President, Jerry Walter

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Join the Fight [br]We need You!

Join the fight against Fabry disease! Make your voice count to create positive change for people with Fabry disease and our families. One important way to help is to take our surveys for everyone's benefit. 

Join Us

Our [br]Supporters

our supporters

We are very grateful for the generous contributions of our corporate, organization, business and individual donors who all make our programs possible. Every size donation matters. 

Supporters

Two Support Organizations

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The Fabry community is fortunate to have two complimentary support organizations providing a diverse set of programs and services. Join the Fabry Support & Information Group also.

Learn More

Featured Programs

  • Fabry Disease
    Symptoms

  • Victory
    Junction

  • Family Assistance Program

  • Our YouTube
    Channel

  • Document
    Archives

  • Fabry Disease Publications

  • Find A Doctor
    Database

  • Remembering
    Family & Friends

Featured Resources

Faces of Fabry